Angelika_23

Julie, I am taking Protonix... Why do you ask this? Should I be afraid?

Hi,

I am having a random hives issue right now. They are on my chest. My doctor doesn't know what is causing them but they are sooooo itchy. It's like they are itchy, then sometimes not so bad. I wish they would go away! I take Zyrtec every day. A hormonal issues sounds interesting. How do you investigate this?

Angela

Have you thought about maybe trying Toprol? That is what works best for me. I don't have any side effects from it.

Are you sure they are going to administer medication? I did not have any administered during my TTT.

My experience wasn't too terrible. The tech person explained everything and kept up a running dialogue/commentary. My HR jumped about 54 bpm within the first 30 seconds - he said I set a record!

It was not a fun test and I was wiped out for two days afterward, but I wouldn't describe it as terrible.

Hi, Atenolol did not work for me. Eventually they found that Toprol XL was the best choice. They did try me on a calcium channel blocker first, and it made my POTS ever so much worse.

Good luck,

Angela

Thanks guys...

I think the rash is poison ivy. It is really really itchy.

The chest pain has subsided. I hope it stays gone forever. That was really freaky.

Flop, the pain was only when I would take a deep breath in. Not when I would exhale at all. If it was a pulled rib muscle, wouldn't that go both ways?

I have a standing appt with the pulm on Friday, so I will talk to them about it then.

Thanks all!

Angela

Good Morning,

About 9 last night I started having sharp pains on the right side of my chest when I would breathe in sort of deeply. I cut short my date night with my husband, got some Gatorade and went to bed. I was up and down all night. I took some Advil this morning, but it didn't do anything. This is different from any chest pain I've had before. I am not tachy, and it doesn't hurt in my back. I called the doctor and she said I probably pulled a muscle in my chest and to take some Tylenol. If I pulled a muscle, wouldn't it hurt when I move about? Because it only hurts deep inside when I take a deep breathe. No movement can cause me pain besides breathing. I am not really short of breath. I do have an odd little circular rash right where the pain is. I have no idea where it came from or why it is there. It isn't itchy, just bright red/pinkish.

Angela

Southwestern Ohio, born and raised.

I saw somewhere, in response to, "You don't look sick". - Maybe it's Maybelline. I thought that was hilarious.

There is a lot of discussion on here about the "anxiety and depression" meds, and how some of them DO help with dysautonomia. Just because it is a medicine for depression or anxiety doesn't mean it doesn't have other uses too. I use Clonazepam, which is a medicine (I was told) for anxiety only, but I KNOW it staves off adrenaline issues for me.

So, I know how frustrating it is to be told you are having anxiety problems, etc. but if the meds really work, heck, stay with them would be my advice. You are lucky to have found something that works.

I hope you find what you are looking for,

Angela

Hi Tara,

Welcome to the forum. Please don't take this the wrong way, but if you've found something to help why do you keep coming off of it? Are there side effects you can't handle, or something else you don't like? I don't understand.

My story sounds very much like yours, except I haven't found anything that helps me to the degree you are describing. I have been on lots of medicines and have had adverse reactions to many of them. Mine came after a bout of viral meningitis. I too have had many doctors say I have anxiety. I think it is sort of a rite of passage for us.

I guess I can understand wanting a diagnosis, I did my share of searching, but I did it to find a way to "cure me" if you will. It sounds like you have found something that works for you, and I am glad for you.

Welcome again,

Angela

Sorry to say this, but when our doctor prescribes meds for sinuses, it is usually a double course because it takes longer to get into the sinuses and get all the yuckies out.

Are you using a neti pot or anything like that?

Hope you feel better soon,

Angela

Actually, they DID say when he is upright, his HR goes up... My husband caught that and said "POTS" before I did!

I know everyone didn't feel they got it "right", but it was very cool to hear the word "POTS" spoken on a big show like that. It should definitely raise awareness.

The person also had chiari too! How cool is that? You can probably catch a rerun on USA this week.

I about fell off the couch! Tonight's episode of House dealt with POTS! I'm still watching it, (DVR) but I wanted to share! It was so cool, I could understand what they were talking about, and the medicines!

I believe I just called his office and asked for an appointment. I don't think I had a referral at all. I know the wait time will be long, I had to wait a while for my first appointment. Even scheduling follow ups is 6 mos out at this point.

Good luck,

Angela

I go to Cleveland Clinic and see Dr. Shields (he's an ANS neurologist). I like him very much. They did order extra testing after I got there. I guess they wanted to see me and my history and go from there. We stayed at the Guesthouse as well. It was clean and it had a shuttle to the doctor's office. Parking was free. My next visit with Dr. Shields is this summer, and I will stay at the Guesthouse again.

I have heard that Dr. Fouad (sp?) is great for diagnosing but not so good at follow up. I have never seen her, but a friend of mine's husband does. They have a hard time getting information and call backs from her.

I was also told initially to stay on my drugs, but when I called back and asked, they were shocked that I was told that and then told me to come off my meds. You probably need to call and verify that.

Good luck,

Angela

I am/was an HR Coordinator for a home healthcare organization.

Hi,

I have had some pretty bad reactions to BB in the past. When they prescribed me Toprol XL, I was almost too afraid to take it. By far, it has been the best. I can't really think of any side effects at all. I am on 12.5 mg a day, a baby dose, but that is what seems to help.

Good luck,

Angela

Griffin, when I am ill, especially with a virus, my tachycardia gets worse. Drink lots of water, eat salt and make sure you don't get too warm. Being too warm will provoke tachycardia for me pretty quickly.

Good luck,

Angela

Just curious, what were you doing when your heart rate was 162? Mine will do that if I am exerting myself like exercising.

Angela

Hi,

I can't tell you what the contraindications are, I guess we would need to know which one...

I was put on Toprol XL, and it does bring my HR down. Toprol can lower your BP, so if you have a low BP that might not be the drug for you. I happen to run normal or high, so it is fine for me. I don't really notice any side effects at all from it. I am just so happy it reins in my HR. I do notice when I have to go off meds for testing though.

Good luck,

Angela

Hi,

Sometimes being sick can cause weird things. I haven't had the drop in HR, but my standing BP has been very high. I have been in a POTS exacerbation for a while now due to a long lasting bronchitis, and since I have started feeling better, my BP is slowly coming down. I find that when I get really sick, my HR stays high and the BP rises. Are you having any other illness that could be contributing?

Good luck,

Angela

Oh Erika,

I am so sorry! You have been through so much and you deserve some answers! I remember early on in my diagnostic stage, I had a neurologist, cardiologist and my PCP at the time all said my problems were in my head. I fired the neurologist and cardiologist and my PCP left and I got a new one. I somehow resisted the urge to send them my positive test results when I was diagnosed later.

I know I didn't make any headway until I went to Cleveland Clinic. They were the first ones (besides my local cardio) to try to help me. I don't know how far away you are, but maybe that would be an option for you?

(((hugs)))

Angela